Last minute update:
Yesterday, as I was drafting this, federal officials arrested six former employees of a drug company for flat-out bribing some doctors to overprescribe fentanyl, which is 40-50x stronger than heroin, the cause of many opioid deaths.

As I’ve said in other posts, this is a complicated subject so don’t jump to conclusions until you’ve read it.

Yesterday, in Opioids. Alarm, and I mean YOU, I posted about how dreadful and drastic the opioids problem has gotten, citing (as just one example) a small high school in Maine where five percent of kids have been dying in every class. Think of how many were in your graduating class, and imagine 1/20th of them dying before graduation.

This is a quick first post to get this online before the meeting finishes. I hope to add more notes below.

I’m in Brussels at the AGM (Annual General Meeting) of the European Cancer Patients Coalition, an association of over 400 cancer patient organizations. They are organized, they’re methodical, they’re action-oriented, working on health policy, drug development processes, patient involvement in clinical trials, and anything else in the patient’s interest. I was invited by Mrs. Kathi Apostilidis, vice president of ECPC and a long-time member of the Society for Participatory Medicine. She is also known as a force of nature.

I’m at the 7th annual Health Datapalooza event in Washington. What I have to say here about this conference is subjective, my gut feel, because I haven’t been at most of the previous ones, because they were largely about the business side of health data – there hasn’t been nearly enough focus on the people who actually have the problem: the patient and family.

This year’s different. It’s managed by a different organization (Academy Health), and a lot of strong patient voices are involved, on stage and behind the scenes. There’s a whole Consumer Track, in addition to all the business things going on. And yesterday we saw a speech by somebody who most definitely fits the category “the people who have the problem.”

Vice President Joe Biden’s son Beau died a year ago this month of glioblastoma, a nasty nasty brain cancer. For his talk I left the main room and went to a side viewing room so I could record it on my iPad.

First, the coffee mug at right has gone crazy viral on Facebook, with over 100,000 shares in the first few days. It’s a great big mudpuddle splash, smack into the changing e-patient reality compared to how many doctors were trained. Yes, there’s junk on the internet and some people (including some patients) are loco. That does not mean patients should just shut up and expect the doctor to know everything. So, on the e-patient blog I posted this explanation:

Second, yesterday’s Washington Post had a great, well researched and comprehensive piece about medicine listening to patients. Reporter Susan Allard Levingston interviewed and cited many people I know and several I don’t, including my doctor Danny Sands, Mayo’s Victor Montori, ACOR, SmartPatients, Inspire.com, PatientsLikeMe, the BMJ’s patient partnership program that I’m a part of, and more. My post about it:

The timing of this clash couldn’t have been more perfect to illustrate the topic of my Grand Rounds as Visiting Professor at the Mayo Clinic last March: We are at the cusp of a profound paradigm change in medicine.

The whole concept of what “patient” can be and do is evolving – but most people don’t know it. Many patients and many docs think patients couldn’t possibly know anything useful; that is no longer the case, and culture clash is happening.

Honestly, this is the work of evangelism – spreading the word, making the case. And you know people are starting to notice when “the empire strikes back,” as illustrated by that coffee mug piece.

Please:

If you don’t yet know about the Belgian health department’s anti-googling campaign (taxpayer-funded!), and you don’t yet know about the British teen who died because her docs told her to stop googling, go read that coffee mug piece. Then read the comments from patients who helped their docs make a correct diagnosis. Then skip over to the Washington Post piece, and read about “the real reality.”

And spread the word! Culture change only succeeds when people spread the word. Thank you!

I’m making a career out of changing the culture of healthcare and I want your help on another cause: honoring a pioneer of women’s rights in my state, New Hampshire.

A couple of weeks ago on New Hampshire Public Radio I heard this segment (text and five minute audio), about Marilla Ricker, who said this – in 1910:

“I’m running for Governor in order to get people in the habit of thinking of women as Governors…People have to think about a thing for several centuries before they can get acclimated to the idea. I want to start the ball a’rolling.”

Not unlike our efforts to have healthcare think of patients as valid contributors in participatory medicine, right? It seems to take forever! But Ricker couldn’t be governor; heck, she couldn’t even vote.

My state’s League of Women Voters and Women’s Bar Association have legislative approval to have a portrait of Ricker painted and hung in the State House – but New Hampshire being New Hampshire, permission is just permission, and they have to raise the $10,000 themselves. They’re more than halfway there – less than $5,000 to go.

HEY GUYS: Why is it that only two women’s groups are honoring this pioneer of fixing a massive cultural mistake??

This is long but if you’re interested in patient data access I hope you’ll find time to read it. Something important is afoot in federal policy.

Updated 6/4 – added a link to a doctor’s blog post

Over on e-patients.net, the blog of the Society for Participatory Medicine, for weeks there have been blog posts about an important moment that’s happening right now in Federal health policy. The details are complex and geeky (imagine that, with Federal policy) but here’s a tiny tiny nutshell, for readers of this blog:

In the 2009 federal stimulus bill (not as part of Obamacare), billions of dollars were designated to help doctors and hospitals finally computerize.

To get the money, they have to not just buy the system and let it collect dust; they have to put it to “meaningful use” – “MU,” as it’s often known.

Not surprisingly, what you have to do to get the money is a topic of hot debate and much lobbying.

Remember your civics class? The Legislative Branch writes a bill, and then in the Executive Branch, regulators write the regulations that put the law into action. The regulators get to say specifically what’s legal and what’s not. (See, lobbyists aren’t just on Capitol Hill – they talk to the Executive Branch too.)

An important part of this discussion for several years has been whether they have to give you and me our data that’s in their systems. Basically: can they use those systems to create your medical record, hoard it (keep it from you), and still get their federal reimbursement??